By Leo Hynett
Tell us about your story – as a Sickle Cell Disease patient and an advocate for the community
Suki was born in 2019 with the condition. Her journey was tougher than most, in the sense that she started experiencing crises as early as 5-6 months old. By the time she was 7 months old, she had her first blood transfusion. At 9 months, she was on the regular transfusion programme. It has been quite the journey for Suki, who has also experienced further health complications that have resulted in multiple surgeries.
We know that the condition is so complex and that it affects each individual differently. Because of this, it’s hard to talk to medical teams or close friends and family about it, as everyone’s experiences are so different. I don’t know any other parent or family who has had the exact same journey as ours.
When I first had Suki, I researched all of the social spaces and platforms for guidance and community. At the time, there were few resources that spoke on the experiences that young children like Suki face daily. For this reason, I decided to set up my own initiative, TEF, to provide families like mine an opportunity to share and support each other.
Tell us about your involvement with, and as part of, the Eleven Community?
We at TEF work with Orlando and the Eleven team on various projects.
My foundation is currently growing, and we look forward to working closely with the team on future innovations.
How did it feel to be recognised for the Young Person Bravery Award? How did you, your family, and your loved ones react?
For us, living through Suki’s condition is just life for us. She has to go through what she goes through every single day. Therefore, I am always learning from this little and growing human. The fact that she continues to push on, and has been recognised for it, is a good feeling.
“To know that somebody else can see her bravery, and recognise that she should be championed for it, made me very proud as a mother.”
What difference do you think being recognised as an Eleven Health Awards finalist will make for your work to support the community going forward?
The one word I would use to describe the difference this award makes is: validation. The community is not often validated in their journey; in fact, it is often the opposite. We’re often disregarded, overlooked, and told that there isn’t much progress in terms of what kind of care or opportunities are dedicated to us.
Creating an award where you’re validating people, like the Eleven Health Awards, will give people in the community a boost of morale and confidence; especially with the mission that we’re trying to achieve.
How would you use being nominated for this award to support others and impact powerful change for Eleven Health Community?
Being nominated for this award has validated not only the bravery and commitment that we as a family show; it also validates the depth of strength that each member of the community possesses.
For those involved with Eleven, especially for those who have been recognised for the awards, I hope to support them in their healthcare journeys and experiences. For the community, sometimes I think we often feel that we are not allowed to feel overwhelmed with what we are going through.
Eleven offer support, both personal and technological, that validates the ups and downs that we go through. The innovations and care that we see through Eleven, upholds its members – both as patients and as the champions they truly are. From mental health and physical health support to the feeling of belonging in a community, Eleven helps to care for everyone that encounters it.
Going forward, what do you think will be the biggest challenge for the Sickle Cell Disease community, and how do you think you and the Eleven community can do to address it?
The biggest thing we need to do is continue this positive conversation around the condition.
We need to make sure that we support each other with honesty and openness, with no strings attached. Often, we are expected to give something in return when we receive help.
As a community, I believe that we need to continue working towards one goal: to support each other no matter what, without any expectations of what we can give in return. Eleven does achieve this, and I look forward to what the future holds for our community.
In your opinion, how does Eleven’s technology support the physical, emotional and psychological needs of the community?
Suki is currently too young to use the technology. From what I have heard, many Eleven members have benefitted from the freedom to understand their condition at a deeper level. Many have been able to travel because they can keep a closer eye on their health levels.
Some members have also begun to understand how their sleeping patterns demonstrate various triggers or moments that affect their health. This is fantastic, as it gives us an idea of what’s happening to us while we sleep – and how this can affect our general condition.
What words of support and encouragement would you give to anyone iwho is on the fence about joining Eleven?
I would say – join Eleven because it is there for you. Eleven gives you the opportunity to learn more about you and your health; this is reason enough to join up.